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Monday, July 23, 2012

Spare Parts

When I was a young teen I went with my little sister
Esther to get my ears pierced at Claire’s Boutique in the local Mall. If you are not familiar with Claire’s Boutique
it is a shop filled with hair accessories and very affordable earrings. I remember the young shop girl who pierced
our ears. She held up a tool that looked
like a pliers. She explained that she
would be placing “studs” in our ears.
These earrings were gold plated and would be locked in place for the
next six weeks. We would need to clean
our ears regularly. After six weeks our
ears should heal and then we would be able to wear other earrings they
carried. She followed up saying
sometimes certain clients did not respond well to metal in their ears. Those
clients would need to stop wearing earrings or use gold earrings only. After telling us all these things she stapled
our ears.

My ears swelled and bled.
The next six weeks were very painful.
My ears were warm to the touch. I
was one of those clients who could only wear gold. Gold earrings are quite expensive, so over
the years I would try to wear the fashionable earring labeled “surgical steel.”
Within minutes my ears when begin to swell and bleed.

I thought about this experience in the years I have been a medical advocate I have spoken to
a great number of patients who have had medical devices implanted in their
bodies. A few of them have suffered a
great deal. They complain of a deep
tissue itch, swelling and pain. I asked
them if any of their doctors explained potential allergic reaction as well as
the shop girl did at Claire’s Boutique.
They all said no. There had been
no warning, no discussion. Now they suffer with little recourse.

There is an patient champion who has made advocacy in this
field her life’s work. Joleen Chambers
blogs under the title FIDA: Failed Implant Devices Alliance. She became part of the patient advocacy
community after spending years speaking for her brother as he suffered in
anguish due to a failed implanted elbow.
He was placed on a long term maximum dose of pain medication. Joleen began speaking out as she became aware
of all of the patients who were suffering with failed implants who could not
find surgeons to repair the damage done.

A year ago Joleen joined the Walking Gallery when she attended the
Patients 2.0 session day at Health 2.0 in San
Francisco. I
finished her jacket there at the event. This
is a jacket for Joleen Chambers, “Spare Parts.”

This jacket is framed by a scene from Doctor Who: a
brilliant British science fiction television program that her family enjoys as much as mine. This image
is based on the first scene in the first episode of the program. This is a scene in a junk yard. The classic blue police box is surrounded by
so much junk and perhaps is considered junk itself.

In of the darkness, patients seem to be scrounging through
the bins and piles of derelict parts. If
you look closely at these patients you will see large wounds at the joints of
their body. Metal hip joints and
shoulder joints are in bins. The
patients paw through the open bins in the hope that they can find a part that
will replace the broken a failed part inside of them.

I thought this a perfect image for Joleen. I am sure there are many who look at this
jacket and do not think it a serious image, just as many people don’t take
failed implantable devices seriously. Joleen has a hard long battle a head of
her. Recently she submitted an essay to
Mayo Clinic for Social Media Scholarship Essay Contest. She is asking all of us to like her essay or tweet it so she can be a finalist in the competition.

I urge you to do so. She works very hard in field shrouded in darkness much like the scene of her jacket story. There is very light in this painting, but light is comes from a smart phone and a person willing to tweet injustice.

1 comment:

Never be afraid to try something new. Remember, amateurs built the ark, and professionals built the Titanic. Regina Holliday is a courageous architect and builder of the ark that patients and their advocates are invited to sail on. I am so grateful that I learned of her and her mission to make all patients safer! I hope more of the professionals join us in the ark!

The Walking Gallery Mini Doc

About Me

Regina Holliday is a resident of Grantsville, Maryland. She serves on the board of the local non-profit The Highland Thrift Shop. She is a member of the Grantsville Rotary Club. She is also Asst. Cubmaster of Pack 460 Cub Scouts.

In addition, Regina serves as a parent advisor to the Garrett County School Board Health Advisory Committee. She is also a member of the Garrett County Chamber of Commerce and The Garrett County Arts Council.

Ms. Holliday is an activist, artist, speaker and author. You might see her at a health conference painting the content she hears from the patient view. She is part the movement known as participatory medicine. She and others in this movement believe that the patient is a partner with their provider and both should work together as a team.

Regina is a mother and a widow; she speaks about the benefits of health information technology and timely data access for patients due to her family loss. In 2009, she painted a series of murals depicting the need for clarity and transparency in medical records. This advocacy mission was inspired by her late husband Frederick Allen Holliday II and his struggle to get appropriate care during 11 weeks of continuous hospitalization at 5 facilities. Her paintings became part of the national debate on health care reform and helped guide public policy.

She also began an advocacy movement called “The Walking Gallery.” The Gallery consists of medical providers and advocates who wear patient story paintings on the backs of business suits. Paint and patients, pills and policy all come together within The Walking Gallery of Healthcare. This "walking wall" of 330+ individuals who wear personal patient narrative paintings on their backs is changing minds and opening hearts. They are attending medical conferences where often there isn’t a patient speaker on the dais or in the audience. They are providing a patient voice, and by doing so, are changing the conversation.

She published a book with the Health Informatics Society of Australia (HISA) entitled: "The Walking Wall: 73 Cents to the Walking Gallery."